Inspiration & Humor
Top Ten Reasons EDS SUCKS!
The votes are in! One hundred and sixty-seven (167) of you responded to our survey about the things that SUCK about EDS. What made it into the top spot as the worst of all? Where did your dissatisfactions rank? Scroll down to find out! How we tallied the results: Each respondent received the same 19 […]
Know Your Love Language? Learn to Speak it Well Despite Chronic Illness
Did you know each of us shows affection and love in different ways? No matter who you might be cuddled up to this Valentine’s Day, it’s important to understand that a successful intimate relationship is a constantly evolving process of tuning in, adapting, and forging deeper connections, compassion, and caring for one another. Becoming aware […]
10 clever comebacks for handling offensive comments about hEDS
Living with a rare disease like hEDS (Hypermobile Ehlers-Danlos Syndrome) can lead to misunderstandings and sometimes offensive comments from people who don’t get it. However, handling these remarks with wit and wisdom can make the situation easier and lighten the load. Here are ten clever comebacks for handling offensive comments about hEDS: “You’re just lazy.” […]
Hypermobility “Stick Men”
Enjoy the creativity of this EDSer who gets her message across with “stick people” stories, communication cards and signs. At times we need a little humor! Hannah from the U.K. has found an effective way to explain EDS symptoms & needs to the public in a casual and light-hearted tone. Click […]
Being Your Own Advocate
Author: Jonathan Rodis President-Massachusetts Chapter of the National Marfan Foundation Head-EDS Massachusetts and New England Support Group “Wow..how many times have you or loved one or a friend been told something totally wrong about your condition from a doctor? Of course, I know the answer…many, many, many times. The worst imaginable place to hear it […]
Explaining Disability – Part of What Makes Us Disabled
Author: Jonathan Rodis President-Massachusetts Chapter of the National Marfan Foundation Head-EDS Massachusetts and New England Support Group “I wanted to share with you something I wrote to help everyone understand what it is like to be disabled, what it is like to have an invisible disability, what to do if you find […]
